Any parents who have children with hearing loss

[horseybird]

Hi I have a 5 month old who was born with bilateral severe sensorineural hearing loss. Her paedtrician phoned us today to say the results of her MRI show she has enlarged vestibular aqueducts, further testing needed to see if there are associated problems.

So many questions! Apparently this sometimes means the hearing loss can get worse. Anyone else in this boat? X

 

[SoBlessedMama]

Hey HB--I know we've chatted on the other thread, but I just want you to know I'm thinking of you.

I completely understand the worry. We are taking our boys to a hearing impaired clinic their hospital hosts next week. We will have the option of meeting with geneticists and trying to determine if their hearing losses are progressive or not. I actually kind of assume, especially for the older one, that the losses are progressive. But the way I look at it is 1) they are both extremely successful using the hearing aids they have right now 2) both have mild-moderate and moderate-severe losses, so there is still wiggle room with more powerful aids if their losses do progress 3) if they progress to profound losses, the vast majority of people are great cochlear implant candidates and 4) if their losses do progress, who knows what technology will be available 10 years from now?

I know that may not be especially helpful, but I feel like we are in really similar situations, and I want you to know I'm here if you ever need to talk. : )

 

[deafgal01]

Have you thought about maybe using sign language to make communication easier?

 

[mummyruston]

Hi, my answer is yes to your post but my son is 4weeks old and I've only just found out he has severe / profound hearing loss and will be fitted with hearing aids on 24th with our first ENT appt on the 2nd.

So I'm following this thread more so for information as I can't help at all with your query but do want to know more about my sons affliction and what that means and find out other people's journeys.

 

[SoBlessedMama]

Deafgal--we discussed sign language, and we actually used SOME sign with both boys (even before we knew they had hearing loss.) Thankfully, they have both adapted wonderfully to the hearing aids, and with the aids, they both test out at normal hearing. I think signing may be an option in the future, just to enrich, but we aren't currently working on it.

Mummyruston--big hugs, I know that can be hard to accept. The great news is that your little guy will become accustomed to the hearing aids and know no different since he's being fitted at such a young age. That's wonderful! Our baby was fitted at 5 months, and our oldest was 5 years. Like I just said, they have both adapted wonderfully to wearing them. The 5 year old absolutely loved them immediately. The baby went through a phase of trying to yank them out and eat them lol. We had to keep a hat on him for several months, and now he acts like he doesn't even know they're there.

We are still so new to this journey, but I can tell you that after the initial shock, it has been an unbelievably positive blessing. It is hard, and I know there will be ups and downs. (The 5 year old starts kindergarten tomorrow, and I'm up worrying and praying no one makes fun of him for wearing them, etc.) But to see their little world's open up has been astounding. And now we are to the point where it is as simple as putting on a pair of glasses in the morning. I hope you have a wonderful experience with your little guy--like I said, I'm totally new to this as well, but I'm here if you ever need to talk!

 

[2lovelyboys]

Just registered on here as I'm in the same situation.

My son is severe/profoundly deaf, diagnosed at 7weeks old hearing aids at 9weeks he is now 10 weeks. Routine preg, good labour no history so it's been very hard to get my head around, still having up and down days, it's so hard not knowing how he will be in the future and the worry and sadness is so strong, I'm not much help with answers but kind of understand what people are going through.

Mummyruston. How are you feeling? Early diagnosis is good and you have apts quickly just make sure you enjoy your little one and look after yourself.

 

[mummyruston]

Soblessedmama / thank you for sharing your experience and great to read your boys are doing well.

2lovelyboys - my pregnancy and birth are like yours. Very straight forward, no concerns, I'm a healthy person and BMI normal, ate well, kept active, no alcohol, no drugs etc and followed guidelines with foods. Like you I have very up and down days and some times I just cry and fear for my sons future and worry about the unknown. I'm just petrified of the hearing aid outcome and hoping he will get some hearing and normality. I also hope that because we have no deafness in our families and no obvious causes there's nothing else

 

[2lovelyboys]

As soblessedmama says atleast there are hearing aids/ implants available,

I also did everything correctly it was such a shock which makes it harder. I now cry less, I've stopped looking too far in the future and just doing my best to care for him now, I have a 2.5 year old he keeps me distracted.

 

[deafgal01]

I'm happy you are all getting the news and support more early on compared to my family's experience of not getting me diagnosed with hearing loss until I was already past the age of 2 even though my mom pointed out to dr that she thought I was having trouble hearing.

And it is amazing to see you all connect with others in similar shoes and supporting each other in this new journey.

 

[mummyruston]

@2lovelyboys

Are you in the UK? Our audiologist has referred us to sensory loss support team (a little like health visiting team) and we've also reached out to our local branch of the National Childrens Deaf Society too.

Hopefully the support of others and being around other families with deaf children should help to ease the pain but crying on and off is very hard. I try to not cry in front of my 3.5yo DD but I can't help it but she's very good bless her and the other day went and got me tissue and said is ok mummy I will make you smile and started singing and dancing.

I just hope on the 24th my boy responds with hearing aids and he can have a relatively normal life and enjoy the simplest of things like music and be comforted by my voice.

 

[SoBlessedMama]

I'm sorry ladies --I know it is a lot to absorb. I also had very healthy, routine pregnancies. The big shocker for us is that the boys' losses are genetic. And my husband and I both have perfectly normal hearing.

I know it is a lot, and I know it is hard and is a process to accept it. But I promise, it does get easier.

I really appreciate you all sharing your stories--and Deafgal, it is SO encouraging to hear of someone "on the other side" of this who has lived a successful and happy life. It makes me hopeful and excited for what my boys will be able to do. : )

 

[deafgal01]

There are more success stories out there. I am studying for a masters degree. I know I have heard stories of others who have gotten jobs in the NASA field and other places. So the happy ending is out there and it will happen for all your children. The challenges will be temporary and these are only small bumps they have to jump over. Just believe in them and let them amaze you with everything they are able to do!

 

[SoBlessedMama]

There are more success stories out there. I am studying for a masters degree. I know I have heard stories of others who have gotten jobs in the NASA field and other places. So the happy ending is out there and it will happen for all your children. The challenges will be temporary and these are only small bumps they have to jump over. Just believe in them and let them amaze you with everything they are able to do!

This brought tears to my eyes, and absolutely made my night. Thank you! : )

 

[mummyruston]

Thank you deaf gal. Your story and many others I'm reading about gives me hope for my son to fulfil his dreams and of course ours for him to be happy.

I knew very little (and still do) about hearing loss and instantly thought of deaf communities who do not speak and sign only for communication. So my mind instantly thought of all the barriers and obstacles in life - not appreciating that many deaf people like yourself go on to lead very mainstream lives and achieve more than many hearing people.

 

[2lovelyboys]

Yes I'm uk (West Midlands). I've had a tough time with appointments due to waiting lists and holidays. I've met my local sensory support worker but the group with other mums and children has been closed over summer, I also want to see happy childrens running around with the same problem and see a cochlear implant.

I also try not to cry infront of my older son, also I missed all the fun of having a newborn, I was struggling, staying in and hiding from the world, that is time I will never have back, so now I stay positive and keep busy, it's still sad and I worry lots but I'm getting on with life and enjoying my boys.

 

[mummyruston]

Hey I'm from the Mids too! Sutton Coldfield...I've contacted both Walsall & Birmingham branches of Childrens Deaf Society but no reply as of yet and noticed there is a family day in September at the Botanical Gardens which I've enquires about.

I've yet to meet my sensory loss worker as every time she calls I'm out with my daughter at preschool or park or something and never hear the phone!

What hospital are you under?

 

[2lovelyboys]

Our sensory support worker came to our house and was flexible with times so hopefully yours will soon, they just answer questions you may have, I've found a lot of the early apts have been more focused on us coming to terms with it instead of my boy, almost like me leading conversations but it's then difficult to know the correct questions! I'm under coventry hospital but the cochlear implant assessment will be birmingham childrens hospital,

I hope the ndcs get back to you ASAP I've not looked in to that just waiting on my local group.

 

[mummyruston]

Our sensory support worker came to our house and was flexible with times so hopefully yours will soon, they just answer questions you may have, I've found a lot of the early apts have been more focused on us coming to terms with it instead of my boy, almost like me leading conversations but it's then difficult to know the correct questions! I'm under coventry hospital but the cochlear implant assessment will be birmingham childrens hospital,

I hope the ndcs get back to you ASAP I've not looked in to that just waiting on my local group.

How is your little man adjusting with aids? Are you noticing he's reacting to sounds now? How are you finding inserting them and taking them out so often based on his age and sleeping?

Are you considering cochlear implants already or just been advised of them?

 

[2lovelyboys]

Mummyruston:

I was hoping you wouldn't ask about the hearing aids! It's really easy putting them in and out, But they do fall out lots as he can't support his own head so they rub off in his baby chairs car seat etc although he isn't bothered about them at all, there is a lot of feedback due to this as the microphone touches things or you when you cuddle them, it will be easier when they are older and support their own head.

I haven't noticed any improvement but it's still early days they ask if you want a referral it's a long assessment period 6 + months it doesn't mean you have to have them after it, my boys nearly 3 months and I'm not sure how long the waiting list is!

Your experience will be different it's hard to tell anything at this age and my boy hasn't registered any sound up to 85 decibels. There are some lovely YouTube videos of baby's hearing with hearing aids so stay positive!

 

[mummyruston]

We're kind of in the same situation really. He's severe to profound - and out fitting is on Monday. I'm hoping he registers some hearing like those lovely videos you have mentioned as it really does give me hope when I see them.

Like you though I have concerns about them staying in, and sleeping, feeding etc. my audiologist said when cuddling / feeding just have the upright one in and swap etc as I asked those questions.

Hopefully for both of us there will be some good news and they'll become second nature like a pair of glasses on a child.

I didn't realise there was a huge waiting list! I will speak to my ENT specialist and ask about it too. I know they're expensive so no wonder there's a huge list but if I'm honest I didn't realise there would be such a demand! I thought it was be very few and far between